Tuesday, February 8, 2011

Re-Establishing Normal

It's been a long whirlwind weekend with some very tense and icy Texas (yeah, that's right- Texas) interstate miles. I need a day or two to get my head back on straight and otherwise organized and then I'll tell you about my weekend. Meanwhile, I wanted to share this article that I just read on CureToday.com about how hard it is to get back to 'normal' after cancer treatment. It really struck a chord with me, although my life is very different than Terry's. It felt right to share it in my blog today.

She squints at me. Duh. Now she only needs her mother. I am, apparently, unqualified although no one in the household has bothered to share the reasoning behind this decision. Was there a committee vote? Doesn’t anyone remember my creativity in installing the new kitchen disposal?

“Where is she?” Alex asks again.

It’s been a few weeks since Terry finished treatment for breast cancer. First there were the surgeries, and then the dosedense chemotherapy, and most recently, the radiation. Despite my having been through cancer myself, I am eager, lately, to not think about it. We are done! Blaze forward!

I remember being afraid of the world called “normal.” Like trying to cross a river by stepping on a lily pad. If I invested and believed too hard in normal, I might trust too much and drop beneath the surface.

Earlier, when I got home, Terry was wrapped in a blanket in front of the television watching re-runs. She just returned to work full-time, and I think re-entry has been a little challenging, but we haven’t talked about it. I saw her a little later emptying the dishwasher, and then she was folding laundry, and now she’s … I don’t know.

I check outside and the garage. She isn’t in our bedroom or the girls’. She isn’t with our second daughter, Abby, napping in the playroom. Nor is she with the dog, perched, as usual, on the hot-tub cover. The minivan is still in the garage. I’m making a circle back through our bedroom when I hear something in our walk-in closet. I open the door, and the crack of light finds a blue thigh.

She’s on her knees on the carpet, surrounded by hanging slacks and shoes. She wears only her blue sweatpants; her hands are over her face, and her elbows cover her naked torso.

“Please don’t turn on the light,” she asks. Her voice is taut and gasping.

“Mom?” Alex is suddenly behind me.

“Not now, honey. I’ll be out in a sec,” Terry says. She says it with a voice I have yet to master. It carries absolute maternal certainty, and Alex withdraws silently.

There’s a pause, and then Terry doubles over onto her knees and emits a wailing sob—it’s a pure silver tone, anguished and grating, and it slices away all the humor in the universe.

“What’s going on?” I ask.

“Alex was looking for you. I think she wants help with her …”

“Nim’s Island,” Terry says.

“Funniest thing, she has this potato.”

There’s a pause, and then Terry doubles over onto her knees and emits a wailing sob—it’s a pure silver tone, anguished and grating, and it slices away all the humor in the universe.

She lets her hands drop to her sides and slowly comes up; her torso is in the light, and my eyes have adjusted.

“I just can’t do this,” she gasps.

I can feel heat radiating out of the top of my head. I’ve been trying so hard not to think about cancer, and rushing headlong into that celebratory “We’re done,” that I hadn’t noticed Terry wasn’t running alongside. But she has to! We have to be done!

She’s looking at me. “What do you mean you can’t do this? The project?” I ask.

“No. All the pretending that we’re normal. We’re not normal. I’m not normal!” she insists. “Look at me!” she orders, “This is who I am now.” She sits up, revealing her chest. Her remodeled torso is naked and still foreign to both of us. Her hair, once long and wavy, is cropped military short, and even her eyebrows and eyelashes are only a faint outline of their former selves. And her optimism— once fierce and unwavering—flickers.

I remembered this phase from my own cancer experience and those of my patients. The terrible fear that lived in my bones that, at any moment, the bolt of recurrence would flash into our lives again, bringing with it the weakness, difficulty concentrating, baldness and scars that served as ever-present reminders that I wasn’t the same person I’d been—and would maybe never be. I was also faster to anger; my post-cancer rage was a frothy river just beneath the winter ice.

I remember being afraid of the world called “normal.” Like trying to cross a river by stepping on a lily pad. If I invested and believed too hard in normal, I might trust too much and drop beneath the surface. It was psychologically easier when there was something to do to fight the cancer. How could I go back to worrying about school and grades and car tune-ups when a hunting enemy might be near? I remember the bravery it took to sit and study for a silly exam.

This mess is what Terry is feeling, I realize.

But we need her to be the mom and wife we’ve had. We’ve been struggling through chemotherapy and radiation and all the fear—for what feels like eons—and now we just need her back. And to shove it behind us.

“We love you, is all. It’s just going to take us time. You don’t have to be anything you’re not,” I tell her, because it’s the only thing I can think of. It rings hollow, like coins landing in an empty soda machine. And I’m still standing, and I sound more like a professor than a husband, so I drop and sit on my knees at her level. Now I’m more like a husband, and see, down here, that we’re in this together. Suddenly I remember looking at breasts on the Internet last night, and we haven’t had sex in forever, and why am I thinking about this now?

But I launch into a reasoned and loving explanation that who she is hasn’t changed at her core, and I remember feeling vulnerable after cancer. Things got better with time, and then I wrap up with a few nicely chosen words about the children and our lives together and even Bisbee the dog. It’s a diatribe, but it’s not horrible. Is it?

One corner of her mouth is turned up. She’s studying me carefully and seems disappointed. She could have delivered this speech herself; it’s too canned. But I don’t know what else to say, so I just stand up, getting tougher now.

“Come on. You don’t have to be normal, but you do have to get up and put on a shirt. Nim’s Island is waiting, and apparently everyone in this house knows I can’t carve a potato into a magical creature.” This does strike a chord, if only a minor one, and now she wipes her face, rises to standing and yells, “I’m coming,” to Alex across the house.

I know that this is the loneliest phase of the cancer experience for everyone. I need her to be normal, and she needs time to find the courage to put her toes into the waters of our future before plunging in. There is no normal here to be found yet, and the words that can bridge our separate worlds are evasive. Time, of course, will help eventually. But more, it will be the micro-life behaviors that will remind us of who we are that will serve as our gradual compass. One small act at a time will forge our new normal. Laughing with a friend. Putting on a comfortable sweatshirt. Making a favorite meal. Helping a child with a project.

Standing in the closet as she padded away up to the dining room where the potato artist awaited, I don’t know what I should have said. I waited a few moments and then came out to the dining room, where Alex and Terry huddled over the shoebox. Terry was carving the potato, and Alex was gluing with one hand and sprinkling something with the other.

And there, on the top of the box, a glittery sky slowly emerged.

Dan Shapiro, PhD, professor and chair of the humanities department at Penn State College of Medicine, is a survivor of Hodgkin lymphoma.